Since my husbands transplant (January 2018) he left hospital with acute GvHD and then developed chronic GvHD. He has been on fortnightly ECP since August 2018 when he developed grade IV (very severe) oral GVHD. At the first lockdown this was reduced to monthly. Whether it was due to this we are not sure but his upper body scleroderma worsened significantly. Currently this is static. We feel that ECP is only just holding back the GvHD. It went back to fortnightly in the late Autumn 2018.(if I remember correctly!)
He has continued to develop one condition after another, as one abates another rears its head. His drug cocktail has grown longer.
We are soon to have a discussion with the team as to whether he should be taken off steroids, ciclosporin and ECP and switched to Ruxolitinib.
I would be really grateful to hear of anyones experience with this drug. Was it successful, side effects, infections, how were other drugs reduced if they were? How long have they been on it etc.
Many thanks indeed for any help with this.